I'm Dave. In 2002, I got sick. I didn't get better after a couple of weeks so I went to see a doctor, which I almost never do, because I'm a physician, too. When I found out that I had an incurable leukemia, I began recording my thoughts and emotions about the disease, and sending them to my family and friends in a series of messages we called "Dave's Great Adventure." I'm having more therapy so I'm resurrecting my old DGA messages, adding new messages and putting them in blog form this time.

Thursday, February 19, 2004

It has been very interesting for me to be, as it were, on the other end of the stethoscope in the last couple of years. I’ve mentioned in past letters little things that haven’t gone as they should, things that many patients may not have picked up on like discrepancies in drug doses, pre-meds, etc. But today, anyone would have noted that things weren’t going exactly as planned.

Kathy took me in to have them change the dressing on my “central line,” the catheter that goes into the upper chamber of my heart. That’s all we were to do. But there was great confusion for some reason about why I was there and who was to do what. After waiting for a while (who doesn’t wait when they go to the doc’s office?) we got to where we needed to be, the same place we’ve gone each time over the last week. My nurse coordinator, my doc, the infusion nurse and another gal who I took to be someone in training, gathered in the room. I took off my shirt to show them the results of yesterday’s surgery. That’s when my nurse uttered the phrase above. I sensed it was not a good thing that I didn’t have an Optiflow.

The four of them kinda stepped back, looked at each other and then again at the tubing protruding from my chest, a bit as if it were an alien creature emerging from my skin. I asked plaintively, “This doesn’t mean we have to replace it, does it?” There were some muffled discussions, but the upshot was that they could make do with the catheter that had been placed. I have the impression that I have a whole lot more tubing than I need.

So, Jeff was there today. We talked about my cough, and I seemed to be doing a lot better. He listened to my chest and said we could go forward with the Rituxan. Great news to me, though I hadn‘t expected to get any chemo today. But, I didn’t want to put this stuff off. My infusion nurse was an older guy today, Rich is his name. He set up the Rituxan and said, “Man, you’ve been getting a whole lot of pre-meds you don’t need.” I agreed. He gave me some Tylenol and Benadryl to take orally, then started the infusion. We skipped the steroids, Ativan, and Anzemet. I didn’t miss them. Three hours later we walked out with no problems and seemingly back on track. We go back tomorrow to see if I can get the cytoxin or not. It will depend upon how my cough is doing and the results of a test we did today to look for dangerous cold viruses which can do bad things to chemo patients. And that’s today’s report.

Since this was a very short report, it gives me some space to launch into my random philosophic musings. What I‘m thinking, this time, is that I’m extremely glad that the treatments seem to be working, and I’m extremely glad to be able to be working on a plan for the future, when the treatments will, at least in theory, not work any more. But sometimes I think, “What’s the point?”

We went through multiple rounds of very expensive cutting edge therapy starting about 20 months ago. This was devised to keep me alive long enough to get to where we are today, collecting some stem cells so that I can again be rescued at some point in the future. At that point, I’ll be brought back to the stage where I am today, just to resume the merry go round. And this round of therapy is costing probably $30,000 or so!

Now, it’s not that I’m anxious to check out or anything. I’m very happy to be alive and thereby be able to be with Kathy and explore the wonderful world we have around us for a while longer, but the bottom line, at some point, is going to be the same. We’re just treating me with this and with that to keep me alive long enough to need more treatments in the future. At some level that doesn’t seem to make sense, and is just a lot of expense. As I’ve told my friends at work, I’m a “bottom line” kind of guy. What’s the bottom line, and why don't we cut to the chase? So far, so good, and I feel well, but when life stops being fun, well, why bother?

Nothing we are doing, or are ever going to do, will “save” my life. We are trying to prolong my life, but to what end? If it is just to allow us to do more treatments, at great cost, then, again, what's the point. But, I guess, that’s what we do in medicine, isn’t it. We don’t “save” lives, we try to prolong them. When I speak of having “saved” a baby’s life by doing an emergency C-section when it was at death’s door, what I really did was to prolong its life, perhaps by seventy years or so, if the child is lucky. And when I’ve “saved” a mother’s life by removing the uterus that was bleeding her near to death, I again have merely helped prolong her life. The death rate for humans is still 100%, is it not (less one person, depending upon your religious persuasions)?

So, in my case, and many others, it’s just like my oncology doc friend said a few weeks ago. The oncologist’s job is to keep his patient alive long enough to die of someone else’s disease.

So, that brings me to a SPECIAL DGA EXTRA CREDIT READING ASSIGNMENT!!!A few months ago when I was immersed in despair and doubts about life, its meaning, and the meaning, if any, of my life, my brother Doug, way out yonder in South Carolina, told me of a great little book I ought to read. This book, The Lives of A Cell, was written by a physician named Lewis Thomas and I can recommend it to all of you as well. The book is actually a collection of short essays he wrote for the New England Journal of Medicine in the ‘70s. There is a brief essay which I’d like to share with you, called “Death in the Open.” It’s only three pages in the book, and will be a quick and, hopefully, interesting read for you. It just makes a lot of sense out of the imponderables of life and death. (It has been very slightly shortened in this transcription.)

DEATH IN THE OPENMost of the animals you see dead on the highways near the cities are dogs, or a few cats. Out in the countryside, the forms and coloring of the dead are strange; these are the wild creatures. Seen from a car window they appear as fragments, evoking memories of woodchucks, badgers, voles, snakes, sometimes the mysterious wreckage of a deer.

It is always a queer shock, part a sudden upwelling of grief, part unaccountable amazement. It is simply astounding to see an animal dead on the highway. The outrage is more than just the location; it is the impropriety of such visible death, anywhere. You do not expect to see dead animals in the open. It is the nature of animals to die alone, off somewhere, hidden. It is wrong to see them lying out on the highway; it is wrong to see them anywhere.

Everything in the world dies, but we only know about it as a kind of abstraction. If you stand in a meadow, at the edge of a hillside, and look around carefully, almost everything you can catch sight of is in the process of dying, and most things will be dead before you are. If it were not for the constant renewal and replacement going on before your eyes, the whole place would turn to stone and sand under your feet.

There are said to be a billion billion insects on the earth at any moment, most of them with very short life expectancies by our standards. Sometimes it has been estimated that there are 25 million assorted insects hanging in the air over every temperate square mile, in a column extending upward for thousands of feet, drifting through the layers of atmosphere like plankton. They are dying steadily, some by being eaten, some just by dropping in their tracks, tons of them around the earth, disintegrating as they die, invisibly.

Who ever sees dead birds, in anything like the huge numbers stipulated by the certainty of the death of all birds? A dead bird is an incongruity, more startling than an unexpected live bird, sure evidence to the human mind that something has gone wrong. Birds do their dying off somewhere, behind things, under things, never on the wing.

Animals seem to have an instinct for performing death alone, hidden. Even the largest, the most conspicuous ones find ways to conceal themselves on time. If an elephant missteps and dies in an open place, the herd will pick him up and carry the body from place to place, finally putting it down in some inexplicably suitable location. When elephants encounter the skeleton of an elephant in the open, they methodically take up each of the bones and distribute them, in a ponderous ceremony, over neighboring acres.

It is a natural marvel. All of the earth dies, all of the time, in the same volume as the new life that dazzles us each morning, each spring. All we see of this is the odd stump, the fly struggling on the porch of the summer house in October, the fragment on the highway. I have lived all my life with an embarrassment of squirrels in my back yard, they are all over the place, all year long, and I have never, anywhere, seen a dead squirrel.

I suppose it is just as well. If it were otherwise, and all the dying were done in the open, with the dead there to be looked at, we would never have it out of our minds. We can forget about it much of the time, or think of it as an accident to be avoided, somehow. But it does make the process of dying seem more exceptional than it really is, and harder to engage in at times when we must ourselves engage.

In our way, we conform as best we can to the rest of nature. The obituary pages tell us the news that we are dying away, while the birth announcements in finer print, off at the side of the page, inform us of our replacements, but we get no grasp from this of the enormity of scale. There are 3 billion of us on the earth [note: in 2004, it is 6.3 billion], and all 3 billion must be dead, on a schedule, within this lifetime. The vast mortality, involving something over 50 million of us each year, takes place in relative secrecy. We can only know of these deaths in our households, or among friends. These, detached from our minds from the rest, we take to be unnatural events, anomalies, outrages. We speak of our own dead in low voices; struck down, we say, as though visible death can only occur for cause, by disease or violence, avoidably. We send off for flowers, grieve, make ceremonies, scatter bones, unaware of the rest of the 3 billion on the same schedule. All that immense mass of flesh and bone and consciousness will disappear by absorption into the earth, without recognition by the transient survivors.

Less than a half century from now, our replacements will have more than doubled the numbers. It is hard to see how we can continue to keep the secret, with such multitudes doing the dying. We will have to give up the notion that death is catastrophe, or detestable, or avoidable, or even strange. We will need to learn more about the cycling of life in the rest of the system, and about our connection to the process. Everything that comes alive seems to be in trade for something else that dies, cell for cell. There might be some comfort in the recognition of synchrony, in the information that we all go down together, in the best of company.